The Beacon and the Wreckage

This resonates with me. It begins to describe how I feel, almost 7 years into MBC. I almost feel healthier, happier and more whole than I did before cancer, but that is not quite accurate. Those particular words are not exactly right.

Healthier: This cannot be within a body with incurable stage 4 cancer, a body that is physically and mentally limited, a body plagued with digestive problems, fatigue and pain. Perhaps I mean that I am comfortable with this body I have. I like it. I may even love it. I marvel at its abilities, even when those are much more limited than before cancer. People my age seem so concerned about aging and I see aging as a wonderful privilege.

Happier: How can I be happier when there is gut-wrenching fear of dying young, before my kids are ready and without my fulfilling my biggest wish in life – to grow old alongside my husband? Surely I am not happier. Perhaps I mean more at peace, more comfortable in my own skin, more confident to practice self- compassion, much better at time management, much more skilled at setting priorities with my own time.

More Whole: How can this very broken body be more whole? Perhaps I mean that I know myself so much better than I did before cancer. I have experienced much trauma related to my cancer journey – chemotherapy, radiation, surgeries and so many scans. I had to quit working, throwing us into financial insecurity and uncertainty. Outside of cancer there have been so many problems. Surviving all this has made me stronger, like bones knitted together after a fracture. Knitting together fractured relationships makes them, in my opinion, stronger than they were before they broke – definitely built on a more solid foundation.

I started this cancer journey with the scary realization that I am in control of nothing – hence the title of the whole blog, “I am NOT in Control.” I have developed a closer relationship with God. I talk to God so much in the normal course of a day. I swear at God. What the eff, God? Seriously, God? God, give me the words. God help me put on my big-girl panties today. God, I just cannot. There is too much pain, anxiety and fear to say, smugly, that I am happier and healthier than I was 7 years ago. I see my cancer in the faces of my husband and our three children. I saw it in my mom. But, to use the selection from this poem, I am now learning to be both lighthouse and sinking ship, the beacon and the wreckage.

Holding Bread

The book Sleeping with Bread opens with this story:

“During the bombing raids of World War II, thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps, where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit on the idea to give each child a piece of bread to hold at bedtime. Holding this bread, these children could finally sleep in peace. All through the night, the bread reminded them, “Today, I ate, and will eat again tomorrow.””

I spent a little time this week researching this story and it is something seen repeatedly in situations with trauma survivors. I sometimes watch the series, “Hoarders,” and it seems to me that most of those featured have some sort of past trauma that prompted the hoarding practice. When their world is spiraling around them, they grab onto some holding bread and cannot let it go.

I’m sitting here in my office amid boxes of photos. They have all been digitized, a completed project from last year. Now I need to choose some to keep and plan to shred the rest. These photos are not my holding bread. I don’t need them to hold onto my memories. That I’m surrounded by boxes is pure procrastination.

So what is my holding bread?

Bread and the imagery of it make my brain come to life. Bread of Life. Bread from Heaven. Bread of the World. Let us Break Bread Together. Communion – at church and at family dinner tables. In my church we celebrate communion to conclude each worship service. For me, it is the “meat” of the service.

The most memorable communion I ever experienced was in a tiny supply closet – turned private space in a mental institution. I had taken my father there for the first of many hospitalizations. My youngest was weeks old and nursing so I wore her in a sling through the whole ordeal. We were each other’s lifelines. My pastor and friend came to us. He asked the nurses where we could sit for a moment. It was me with a baby, him, a folding table, two folding chairs, a packet of saltine crackers and a little plastic container of peel-the-foil-off-lid-imitation grape juice. He blessed it. We shared the elements. I felt God in that closet, in that institution that seemed farther from Heaven than anyplace on Earth. Holding Bread.

My dad’s struggles with mental health never waned. They changed slightly when he developed Parkinson’s and his physical frailty finally caught pace with his mental frailty. I spent the last several years of our years together visiting him every Sunday afternoon in a nursing home. I would bring the bulletin from church and read through it with him, reading the scriptures and recapping, to the best of my recollection, the message that day, this time from a new pastor and friend. I taught Sunday School with this pastor, so I also recreated the Sunday School lesson with Dad. I ended every visit by grabbing his hands tight and saying the Lord’s Prayer with him. At the end, I would add, “Daily bread, Dad. I have it and you have it and it’ll be there tomorrow.”

I had never heard the story about Holding Bread then.

After Dad died, but before cancer, life was chaotic. I was fighting multiple fires from many angles all at once. I clearly remember driving home from work on a county highway and suddenly experiencing vertigo. I turned off on a side road and sat there, reeling. What was happening? Suddenly I had the physical feeling of floating on my back in a sun-warmed pool, one of my favorite feelings. I heard God tell me to relax and float. I don’t know how long I sat there, but eventually the vertigo left and I finished my commute home. Holding Bread.

For me, holding bread can be as simple as things that remind me of moments of peace and joy – warm memories, thoughts of people I love, a glowing candle, kneading dough, playing piano, walking in fresh air, my dog. But Holding Bread is much more than that. Daily Bread. I have it and you have it and it’ll be there tomorrow.

Marking Time

TODAY was a “false spring” February day in Central Illinois. Temperatures reached the mid-sixties and the sun reached into my soul. Madi and I took a long walk on our county road. We heard children playing in Elliott – happy shrieks and laughter and an occasional “not it.” We saw a group of children trying to walk a big dog who preferred to drag the small youngster holding on the end of the leash. More shrieks and laughter at that escapade. We saw a family playing at the park. We passed a chicken coop that is so difficult for Madi to ignore. We heard birds chirping happily, enjoying a day that doesn’t require all their energy to merely survive.

YESTERDAY I heard one of my favorite stories in church, when a group of people wanted to get their paralyzed friend in front of Jesus to be healed. They could not get through the crowd, so they cut a hole in the roof and lowered their friend down in front of Jesus. I am obviously paraphrasing. You can read it at Matthew 9:1-8. I have mentioned before that healing is a difficult concept for me to hear in church now. Metastatic breast cancer has no cure yet. There is no healing the MBC I face. I have come to see my healing as collecting moments of peace and joy and hope with the recognition that they outnumber the bad moments. I also think of my friends and family who keep cutting a hole in the roof for me to be placed in front of Jesus. I am so lucky.

TOMORROW I will have treatment #113. I absolutely do not want to go. Every three weeks. Time passing by with a solemn, slow drum beat. I think of all the things I wanted to do in the last treatment cycle, but did not. I think of how I will feel the next few days. I think of all the things I would rather do than go to St Louis and get an infusion.

But TODAY there was sunshine and happy sounds and fresh air and Madi. I thank God for TODAY.